“Music, … When it hits you, you feel no pain.”

Since Meghan’s surgery last Tuesday, she and her wrapped hand, and foam “Carter’s Block,” have been sleeping in the king size bed with me, while Daddy has slept in the twin in Meghan’s room.

She usually needs a little bit of room, as she isn’t the calmest sleeper, but we knew with the new foam addition, there would be no way the three of us could fit.  So, with Meghan came her pillows, and her iPad.

no sleep

Her iPad has a playlist that she plays through the night when she sleeps.  I always knew it was on, but this past week, as life has made sleep a bit elusive, I have gotten opportunity to listen to this 23 minute segment several times.  Yesterday I looked up the lyrics, and as usual I was in awe of what she had assembled.

In our house we listen mostly to Contemporary Christian music.  We are Christian, yes.  But typically the type that tries to spread the love by example rather than with a Bible in your face.  That being said, the move to Contemporary Christian music evolved after Meghan became old enough to hear, sing, and understand the lyrics, and the DJs on the radio.

I was, on more than one occasion, appalled at the level of exposure my then 5 or 6 year old child had to things I wanted her sheltered from a bit longer.  So, I switched the station.  And I kept it there.

Now, don’t misunderstand,  She is not bound to listen only to Christian music.  She can pretty much listen to whatever she wants.  She has an Itunes account and downloads music of her choosing, with our permission.  And, there are plenty of afternoons you will hear a good Classic Rock station blaring out our car windows.  But, like anything else, my initial changing of the radio station led to conversations.  And I like conversations.

Meghan became aware that many of her friends at school were familiar with other musical artists that she had never heard of.  So, it became practice that every time she brought home the name of an artist or song, as long as it wasn’t overly offensive – we would buy it.  But I loved that our conversations got her looking at lyrics, hearing what she was singing along to, and taking responsibility for her choices.

I know that music is a very personal thing. I will not be the Mom who is in denial, or tries to over regulate.  It will lead to rebellion and there is no need.  I will talk to my daughter regularly about valuing herself, her body, and other people.  We will talk about what lyrics mean.  Then, she will, as preteens do – do as she likes.

But for now- the “sleep” selection on her iPad is a powerful collection of 6 Contemporary Christian songs.

The first is “Stronger” by Mandisa that begins…

“Stronger”

Hey, heard you were up all night
Thinking about how your world ain’t right
And you wonder if things will ever get better
And you’re asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather
Oh, don’t hang your head
It’s gonna end
God’s right there
Even if it’s hard to see Him
I promise you that He still cares
Then, it  moves on to Kutless, “That’s What Faith Can Do”
Anyone can feel the ache
You think it’s more than you can take
But you’re stronger
Stronger than you knowDon’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining
I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason
For someone not to tryEverybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright

Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

Followed by “Courageous” by Casting Crowns
Seek justice
Love mercy
Walk humbly with your GodIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handWe were made to be courageous
And we’re taking back the fight
We were made to be courageous
And it starts with us tonight

Fourth up is “Blessings” by Laura Story
We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we’d have faith to believe’
Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It’s not our home
And the last 2 are by a somewhat spunky artist called Francesa Batistelli
“Motion of Mercy”
That’s the motion of mercy
Changing the way and the why we are
That’s the motion of mercy
Moving my heartLiving for the lost
Loving ‘til it hurts
No matter what the cost
Like You loved me first
That’s the motion of mercy
God give me strength to give something for nothing
I wanna be a glimpse of the Kingdom that’s coming soon
And finally – “This is the Stuff”
I lost my keys in the great unknown
And call me please ’cause I can’t find my phone
This is the stuff that drives me crazy
This is the stuff that’s getting to me lately
In the middle of my little mess
I forget how big I’m blessed
This is the stuff that gets under my skin
But I’ve gotta trust You know exactly what You’re doing
Might not be what I would choose
But this the stuff You use…
…So break me of impatience
Conquer my frustrations
I’ve got a new appreciation
It’s not the end of the world…
I know everyone’s taste in music differs greatly, and I do not expect that anyone will listen to all 6 of these.  But I encourage you- choose one.  Any one that speaks to you.
I have been struggling to get to sleep, but I will miss the soothing repetition of some of the most powerful songs I know when the stitches come out tomorrow.  One more night.  Then everyone gets back to their own beds!
music no pain

I Know Why The Caged Bird Sings

I Know Why The Caged Bird Sings

The free bird leaps
on the back of the wind
and floats downstream
till the current ends
and dips his wings
in the orange sun rays
and dares to claim the sky.

But a bird that stalks
down his narrow cage
can seldom see through
his bars of rage
his wings are clipped and
his feet are tied
so he opens his throat to sing.

The caged bird sings
with fearful trill
of the things unknown
but longed for still
and his tune is heard
on the distant hill 
for the caged bird
sings of freedom

The free bird thinks of another breeze
an the trade winds soft through the sighing trees
and the fat worms waiting on a dawn-bright lawn
and he names the sky his own.

But a caged bird stands on the grave of dreams
his shadow shouts on a nightmare scream
his wings are clipped and his feet are tied
so he opens his throat to sing

The caged bird sings
with a fearful trill
of things unknown
but longed for still
and his tune is heard
on the distant hill
for the caged bird
sings of freedom. 

Maya Angelou

 

I am sure this is not what Maya Angelou had in mind.  And really for the safety and sanity of my friends and family, I don’t sing – ever.  Yet the phrase about the caged bird keeps running through my mind.

Being caged is an illusion in some respects.  I have a beautiful house, and a lovely family.  We have two cars that work sometimes, so we do have access to the outside world.

Yet sometimes life with Cowden’s Syndrome can make you feel caged.  It takes away the freedom, the ability to go as you see fit.  It robs you of the carelessness that should be an inherent part of a 10 year old’s day.

And even as some days I want to cry with frustration – my young caged bird continues to sing…

caged bird

This is the summer of irony.  All over the place and in our faces.

Not lost on us are the numbers of family and friends whose privacy I respect too much to mention, but whose lives are upended, and who are in their own right “caged birds.”

All summer we sat at doctors.  One after another.  Hours upon hours upon hours.

Now- we don’t have any appointments.  But the broken wing- the wrapping on her hand and the stitches prevent us from getting too far.

The hand has to be elevated with a Carter Block, until the stitches come out Thursday.  Then we can talk about resuming therapy.  Today the calendar is empty.  The sun is shining.  And here we sit.

Not exactly alike - but you get the idea
Not exactly alike – but you get the idea

The pool is crystal blue under the bright sky.  Taunting.

I can take her out but if we go too far, or do too much, the throbbing begins again.  Maybe we will make a quick trip somewhere just to get out.

I have a million things to do.  No shortage of work to keep me busy.  But, I can’t seem to get anything done.  Irony.  You want and want for time to get things done, and then… it’s like I developed a full blown case of ADHD.  I can’t keep up with my mind, and the list just grows.

If I take responsibility, some of this feeling comes from my general lack of spontaneity.  I am a planner.  Much to my detriment.  I long to be the one who just gets in the car and goes.  But even though I struggle with this and try to gain a glimmer of impulsive behavior, the reality of our lives seems to tether us close to home.

Allergy meals are tough to come by and can’t be taken for granted.  Food and enzymes must be planned….The consequences are dire and painful.  I won’t take the risk.

So, here we sit.  God bless her, and her patience as she alternates reading, TV, and playing with the iPad.

I am working on laundry and the floors, and cutting some 100s charts out of laminate for school.  Always moving, and accomplishing precious little.

I am breaking out into a cold sweat as I schedule our next round of appointments.  What a feat.  Distressing, disturbing, necessary waste of time.  I have about 8 scheduled for us from December to February already.  And a few others sprinkled in for good measure.

worry 2

We see the doctor on Thursday.  She should get some freedom then.  Just in time to set up my classroom.

Maybe I will just open the cage long enough to sit on the deck, or take her for a walk around the block.

Have to remember the little things, because they really are the big things, right?

the-little-things

Staying focused…

When Pigs Fly

Penelope
Penelope

At the very end of school I received this gift from a 4th grade student of mine.  I think it is probably one of my favorite gifts in my 17 years teaching.  Small and delicate, yet tough and determined.  Not much for collecting things, but this was a keeper.

Meghan continues to battle her way through the pain of recovery.  She rests and reads and watches TV to pass the time.  She is tolerating the pain a bit better, although the reality there was a scalpel scraping scar tissue off the ligament and nerve in the center of her palm is not lost on her every few hours as the medication starts to wear off.

The day we came home I explained to her (again) about how Cowden’s Syndrome likes to “overgrow” things.  We talked about “hyper-healing,” and her body’s desire to overproduce cells to try and solve a trauma.  That is a crude explanation of our tumor growth.  That same crude explanation can be used to explain why some Cowden’s patients have a prevalence of scar tissue.  Every time there is a surgery, or an injury the body over works, and sometimes the result can be just as bad as the original problem.

pigs fly

Overcoming impossible odds.  I like the way that sounds.  The overcoming part, that is.

So, we talked about range of motion and the need to keep on moving those fingers so the scar tissue doesn’t form and stiffen things up.  She knows she will need therapy.  She is used to that.  She did not like the thought that her range of motion could be affected permanently if she didn’t move.

With raw determination she wiggles her fingers.  Several times an hour I watch her wince in pain.  No one tells her to.  She just knows she has to, and she doesn’t like the thought of the alternative.

See its all about the swimming.  Her sport.  Her niche.  Her comfort zone.  Nothing will keep her out of the water for long.

The pain exhausts her.  She has circles under her eyes, not from doing much other than being in pain.  But for those of you who live with chronic pain – you know that it wipes you out.  So she sleeps.  13 hours when she can.  Better for the healing I am sure.

When I was dusting this afternoon I came across my friend Penelope Pig, and I thought of how relevant she is.

I thought of all the times in my young life I uttered sarcastically the phrase, “When pigs fly!”

I thought of my arrogance and how little I knew about the important things on life – the things worth fighting for.

I realized in all its ridiculousness, it can  actually be a poignant phrase.

I’m going to let this surgery stand in my way – WHEN PIGS FLY!

I’m going to stop swimming – WHEN PIGS FLY!

It fits for so many things in life.

So many other things on my mind.  So many thoughts all garbled up inside.

Sometimes I feel like we are running on raw nerve, on sheer will and determination.

And guess what – we will give up….

WHEN PIGS FLY!

when_pigs_fly

 

Recovery

never give up

 

 

Recovery.

We should be professionals around here.  We should just get up, get going and move on.

But we are human.

We hurt, inside and out.

We get tired, and lonely.

We understand the tired and lonely that others have too – but some days it doesn’t make ours better.

Some days its hard to look at things from someone else’s point of view.

And that’s OK.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂

Meghan is full of exhaustion and pain and conflicting emotions.

It’s annoying to realize you blew your whole summer at doctors and in surgery.

Thankfully we snuck in that Disney trip.

I can, and I do, take solace from my Facebook friends- the ones I know for real, and the web of Cowden’s survivors I have become intertwined with.

She has a smaller network.  Mostly because I don’t think she is capable of realizing the effect she has on the lives of so many others.

there is no pain i cannot fight

Yet, she is my hero.  And my rockstar.

I shuffled her around these last few days a lot more than I wanted to.  But, she likes to stay close by me when she is hurting.

So yesterday we picked up the car.  Apparently the “Magic Wand Guy” (Field tech) ran out of pixie dust.  He declared my car “not broken.”  Ironic because 2 weeks ago the same shop who held it for 10 days said they couldn’t fix it.

It’s definitely still broken.  On to the arbitration with the Better Business Bureau.  Just in case someone thought we might rest.  No worries.  Gloves are on.

She went with Felix and I for our physicals last night.

Then this morning, she went to work with me for a bit, and to pick up some of Daddy’s medical records.  (Really WHAT was I thinking staying close to home for a doctor?)

She is tired.  But she smiles.  And she hugs us.  And she asks for pain medicine.  And she wiggles her fingers.  And she looks at her pool, and the calendar, and she feels the inevitable.

I can’t stop it.  No one can.

So we keep busy.  We rest.  I stay close by.  We giggle and make jokes.  If I had to “lose” a summer, I couldn’t have lost it with a better young lady!

Recovery.

No worries – WE GOT THIS!

no one sees

 

Future Doctor, Meghan

If they would just listen to Meghan.

I mean really listen, and stop dismissing her.

Since before she could talk we have been working to help this kid become more aware of her body.    She can troubleshoot what works for her.  She can tell me what foods and medicines help her or hurt her.  Every day she becomes more keenly in tune with herself.  Its necessary.  That is how we keep her healthy.

My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions.  Those are the situations where doctors might miss something- even if they are trying.  Those poor children might suffer needlessly if no one can determine the source of their discomfort.

But not Meghan.  If you will listen.  She will tell you.  If you pay attention.  You will understand.

If she hurts- the whole world might know.  If she doesn’t hurt anymore, even 5 minutes later, its like it never happened.

That’s it.  Plain and simple.

So when she hurt her hand June 4th, I kept waiting for it to get better.

I played tough for a few days, but it still hurt.

Then we tried ice, heat, brace, no brace, different brace – but the pain persisted.

Dr. Jill, our Physical Therapist kept saying, “I think it’s vascular.”

Meghan kept saying, “It pulses like my AVM.”

And on we went – to the vascular surgeon, for the MRI/MRA, to the orthopedist, to the local hand surgeon.  Each one finding a reason to dismiss her, and this pain that persisted.

Pain doesn’t persist.  Not like this.  Not with her.

And, when you have Cowden’s Syndrome, any pain that persists more than 10 days consistently really should be evaluated.  You never know where those tumors may grow.

But the MRI, the three hour MRI with 4,000 images was negative. (Although I still have my doubts.)

And, Meghan calmly told the vascular surgeon she thought it was an AVM.  He said no.

As the pain mounted over the weeks that followed, and we bounced through other routine follow ups that seemed to swallow up our summer, Meghan took solace in Dr. Jill.

You can’t put anything over on Dr. Jill, but she knows kids, and she knows Meghan.

“Look at this,” she said to me.  “It has its own blood supply.  That’s why it stops hurting when she puts pressure on that mass.  She is cutting off the blood supply.”

watch me

Meghan would smile, knowing she was understood – at least by someone.

“Vascular pain goes up the arm, orthopedic pain doesn’t,” she would almost  mutter to herself.

And I knew if they were BOTH sure, then I was sure they were right.

I emailed her oncologist, and her genetecist.  I sent them pictures.  “Biopsy those,” I was told in no uncertain terms.

So Dr. Jill wrote a detailed professional letter to a local orthopedist.  I am still not sure he understood all the words.

Then there was the local hand surgeon, who read the letter, and just spent the visit looking perplexed and bothered.  The MRI report was negative, his Xray was negative, and there was this bump below her middle finger.  He sent us away – apologizing for not helping, but convinced there was no need for surgery.

That was the day Meghan coined the phrase “Donkey Butts!”  And I couldn’t blame her.

donkey-butt 2

I went right home from that visit and sent a desperate EMail to the oncologist again.  This time I asked for a referral.

She is a woman of few words.  Her reply was a link, and the words “Go here.”

hand 2

So, I called and made an appointment.  They took our out of network benefits.  We got in the day before vacation.

He looked at Meghan.  He talked to her.  He sent her for more Xrays.  They were negative.  Then he looked at her hand again.  He told her that he knows all about kids and how well they know their bodies.  He told us he treats a few boys who grow bone instead of soft tissue tumors.  He told her that the boys ALWAYS know where the problems are.  She brightened.

Then he drew a very logical picture of the hand, and traced out the main ligament and tendon.  He showed the connection from the soft tissue tumor to the painful wrist spot.  He let her feel it, and he told her she made sense.  She smiled a huge smile.

Finally a doctor who DIDN'T remind me of this one!
Finally a doctor who DIDN’T remind me of this one!

The he said to us that even though the Xray is negative, sometimes surgeons have to use their heads.  Clearly the tumor on her hand was causing trouble.  Clearly it had to come out.  Exactly what that would mean once he got in there would have to remain to be seen.  Relaxed and encouraged that someone was using their head, we scheduled the procedure and left for Disney.

Disney had its ups and downs, and one of the struggles was the frequent hand and wrist pain. Meghan is in pain so often, she can differentiate between the chronic pain, like her hips and knees, and the pain that she can’t stand, like her wrist and hand.  Chronic pain is absolutely exhausting.

Today was the surgery.

20130820-090603.jpg

We went to a LOVELY outpatient facility on 42nd Street.  The place was clean, the reception was smooth and effortless.

The nurses were darling, every one of them.

The anesthesiologist instilled comfort, and the surgeon, Dr. R was warm and calming.

The procedure lasted longer than I expected – almost an hour and a half.

time-warp

I wasn’t surprised to hear the words that have become normal. “It wasn’t exactly what I imagined, but I am pretty sure I got it all.”

A soft tissue tumor, with roots, AND an AVM (arteriovenous malformation) with its very own blood supply!

So many thoughts went through my mind – including, “SHE KNEW IT ALL ALONG!,”  and “THANK GOD FOR DR. JILL!”

I was grateful for Dr. R, his patience, his trust in Meghan, and his ability to get it done.  I was also instantly tossed into a new level of worry.  See, all along they have been insisting the AVM in the knee was an isolated incident.  I shouldn’t worry about more cropping up.  Well one just cropped up.  Game changer.

I was thinking about the rock wall she climbed June 4th, and even after all this turmoil, I am still glad she did it.  Although we now almost undoubtedly know that the AVM was under the surface all along, and the bruising her hands took caused her body to “hyper heal,” and likely led to more blood being pushed towards the AVM.  The soft tissue tumor erupted some time later.

While the exact sequence of events doesn’t matter, a few things do.

Meghan and Dr. Jill are really intuitive.

AVMs can take place in multiple spots.

Dr. R had to scrape the scar tissue off the ligament, and tendon and nerve in the hand.

Meghan will need quite a bit of therapy (after 9 days of keeping the hand wrapped) to get her mobility back.

I absolutely can not wait to get the pathology report and share it with a few doctors who blew off my girl.

And, most importantly – NEVER DOUBT MEGHAN!

meg doctor kid

It Never Gets Easier

They say “practice makes perfect.”

I disagree.

No matter how many times we practice this scenario, for surgery, for biopsies, for tests- it is no easier now than it was the very first time.

And boy have we had practice!

This morning, as Daddy walked with her to the operating room,(our routine firmly in place – Daddy does the OR and Mommy does any overnight stays) I was still struck with the distinct feeling that I had been kicked in the stomach with a large pair of steel tipped boots.

This one should be ok. 9 days wrapped and dry. Stitches removed, and we should see progress.

As long as…

Well now we fidget and pray and keep busy. There will be time for the rest.20130820-090603.jpg

Raising Awareness – One Card at a Time

I am going to brag.

Brace yourself.  It might be a long one.

A short time before we headed to Disney, I wrote about taking out Meghan’s push chair for an appointment in Manhattan.  She was terribly bothered by the rude stares that greeted us that day.

As a result we talked, a lot.  And, like she always does – she comes through those conversations blowing my mind with her introspective maturity.

Don’t misunderstand me.  I sometimes worry that my 10 year old is such a deep thinker.  I am acutely aware that she has way more on her plate than she should, and she handles with grace and poise a life that would leave many adults weeping under their covers.  I wish she told me everything.  I know she doesn’t.  My heart often breaks for the burdens she carries.

Yet, she is just so amazing.

After we spoke about the rude “starers” she talked about wanting to have a way to let them know about Cowden’s Syndrome.  She wanted to raise awareness.

This card was created out of her need to "teach" others about Cowden's Syndrome.
This card was created out of her need to “teach” others about Cowden’s Syndrome.

So she gave her ideas to Daddy and he created this card.  We used the logo from the “Global Genes Project,” an organization that has been dear to Meghan since her diagnosis. http://globalgenes.org/

Meghan wears proudly the denim ribbon created for her by a family friend when she expressed a desire to have a ribbon. something she could wear that would represent her.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!"
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

She dreams of one day seeing another child wearing this symbol.  She wants it to become as common as the “pink ribbon.”  Because, there are about 7,000 rare diseases, and 1 in every 10 people is affected by one.  Many of these diseases are genetic.  As we learn more about other rare diseases, Meghan understands the need for the rare disease community to unite.  So little research is done on so many of these diseases that they remain poorly understood and under funded.

As we packed for the trip – Meghan asked if we could print some of the business cards for her to bring to Disney.  She wanted to be able to hand them out.  She knew people from all over the world visit Disney, so it would be a great place to spread the word.  500 cards later, I made sure she had all the tools she needed.

What happened next was just another example of how easy it is to be proud to be her mother.

Meghan decided that instead of getting an autograph book this year, she would take pictures with the Disney characters with her cards.

She also spontaneously struck up conversations with complete strangers all over the parks.   She would approach cast members, wait staff, photographers, and guests.  She spoke to people from the US and well beyond.

And every time she spoke my heart smiled.

She is an incredibly articulate young lady.  She explained Cowden’s Syndrome through the eyes of a ten year old to almost 200 people.

Some of the most memorable included a man and his wife and their service dog on the bus to Downtown Disney, and a helpful cast member from Puerto Rico outside the fitting room as she tried on her Merida dress, and a Disney Photopass photographer whose genuine hug was so heartwarming.

Those were just a few.  She spoke to so many people over the course of our 9 day trip that I have no doubt there is a greater awareness of Cowden’s Syndrome in the world than there was just 2 weeks ago.

She will tell you she is not a public speaker.

She might even try to tell you she is shy.

I will tell you she is flat out amazing, and that she is going to do already doing great things.

This child will make the world more aware – one card, and one conversation at a time.

These are Just a few who learned something new this week!

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